The impact of including caregivers in self-management interventions in long-term cardiorespiratory illnesses

Abstract

Background: An estimated 6.5 million people are providing unpaid care in the UK. Cardiorespiratory illnesses, including heart failure, chronic obstructive pulmonary disease and coronary artery disease are amongst the leading causes of mortality and hospitalisations globally. People living with these conditions are required to adapt their lifestyle and behavioural to manage their illness. Caregivers are increasingly relied upon to provide support in these lifestyle and behavioural changes. However, understanding the impact of including caregivers on the health outcomes of patients living with long-term cardiorespiratory illness is inconsistent. Additionally, understanding the impact of including caregivers in self-management interventions on caregivers' quality of life lacks clarity. Aim: This first aim of this research was to understand the impact of including caregivers in self-management interventions for patients and caregivers living with long-term cardiorespiratory illnesses. The second aim of this research was to understand how inclusion in a self-management intervention informed caregivers in their role and the subsequent caregiver actions which influenced patient health related quality of life. Methods: Four linked research studies were completed. First, a mixed-methods systematic review was undertaken to understand the lived experience of being a caregiver for patients living with long-term cardiorespiratory illness (chapter 3). Second, a meta-analysis was conducted to synthesise the current body of evidence of randomised controlled trials (RCTs), which included caregivers in intervention delivery for long-term cardiorespiratory illnesses (chapter 4). Third, quantitative and qualitative secondary analyses of the Rehabilitation Enablement in Chronic Heart Failure (REACH-HF) trials were undertaken. REACH-HF is a home-based self-management intervention for heart failure patients and their caregivers that formally included caregivers in its design and delivery. Quantitative analyses were completed at 4 and 6 months follow-up. These analyses examined three aspects of caregiver involvement in REACH-HF. The impact on patient health-related quality of life when formally involving caregivers in the REACH-HF intervention. The impact on caregiver quality of life following participation in the REACH-HF intervention and, lastly, whether there were factors that predicted caregiver health outcomes in response to the REACH-HF intervention (chapter 5). A qualitative secondary analysis utilised a cross-case analysis approach. The purpose of this analysis was to explain the quantitative findings and examine the nature of caregiving and how this contributed to patient self-care (chapter 6). Results: The mixed-methods systematic review synthesised 54 studies (26,453 caregivers) (chapter 3). The concepts identified in this review emphasised the complexity of caregiving for adults with long-term cardiorespiratory illnesses and demonstrated the impact of caregiving on: (1) mental health, (2) caregiver role, (3) lifestyle change, (4) support for caregivers (5) knowledge, and (6) relationships. Four concepts were explicitly identified in the qualitative literature: (7) expert by experience, (8) vigilance, (9) time, and (10) shared-care. The quantitative meta-analysis of 13 RCTs (1,701 patient-caregiver dyads) (chapter 4) demonstrated that the pooled effect of patient health-related quality of life in RCTs that included caregivers in intervention delivery compared with studies that did not include caregivers were not significantly different (p = 0.84). Quantitative analysis of the pooled REACH-HF randomised controlled trials included 266 heart failure patients and 118 caregivers. The univariate analysis demonstrated improved health-related quality of life outcomes for patients when a caregiver was included in the intervention. Mean increase in overall Minnesota Living with Heart Failure Questionnaire score of 10.6 (CI 95% 2.7 to 18.4, p = 0.008) at 4 months follow-up. The direction of effect towards caregiver presence remained at 6 months follow-up (9.6, CI 95% 1.1 to 18.2, p =0.026). Multivariate analysis demonstrated that an interaction effect on patient HRQoL in favour of patients with a caregiver remained at 4 months follow-up (9.9, 1.9 to 18.0, p = 0.015). However, this was not sustained at 6 months follow-up (2.2, -0.5 to 4.9, p = 0.113). Increased patient illness severity was the most consistent predictor of caregiver outcomes, however this was not observed across all caregiver outcomes measures. REACH-HF did not consistently demonstrate improvements across all caregiver outcomes; however, it did demonstrate potential to improve caregiver anxiety as well as social and lifestyle burden. The qualitative secondary analysis demonstrated that as a result of REACH-HF, caregivers were enabled to engage in overt and discrete caregiving tasks. Overt caregiving tasks included use of the REACH-HF progress tracker to communicate effectively about HF self-management. Discrete caregiving tasks included utilising the knowledge obtained from the patient manual and caregiver resource to make decisions about how much assistance to provide to the patient dependent on what the caregiver observed (e.g. face colour, tone of voice). Sustained change was difficult to achieve for some patient-caregiver dyads, some caregivers had difficulties motivating the patient to maintain engagement with self-management strategies. A combination of factors was identified by patient-caregiver dyads who reported difficulty maintaining change. These included, the duration of diagnosis, the severity of illness, the demands on the caregivers’ time, and the concept of the meaningfulness of the task for the patient. Conclusions: Caregivers do have a key role in the self-management of patients with long-term cardiorespiratory illnesses, such as HF and COPD. Understanding the caregiver role and the nature of the patient-caregiver relationship can significantly influence how we can better engage patients in the self-management of their illness. REACH-HF facilitated patients and caregivers to communicate effectively about HF self-management, increased their HF knowledge and skills and enabled caregivers to feel supported with the inclusion of the wider family. That disease severity was the most consistent predictor of poor caregiver outcomes, and the challenges of sustaining behaviour change indicates the need for ongoing healthcare support for both patients and caregivers as disease progresses. The value of engaging in self-management tasks that are meaningful to the patient and caregiver was an important finding and is an approach that may facilitate sustained behaviour change. This thesis discusses the methodological and practical implications of these findings on the involvement of caregivers in healthcare interventions for long-term cardiorespiratory illnesses and future research.